life • love • learning
with our girl at the edges of the autism spectrum

Friday, February 24, 2006

Oughtism or Sweet Dreams

Since we were staying in a motel on our little mini-vacation in Hershey, PA, we found ourselves eating dinner out a couple of nights, which is something that we rarely attempt in the city. This proved to be the most challenging part of the trip because Sweet M's olfactory sensitivities make so many food odors disgusting for her.

The first night, in an Italian restaurant with overpriced and barely edible food, Sweet M was squirming, grimacing, getting up out of her seat, and demanding, "Ewww, get it away, get it away" when our pastas with a slightly garlicky tomato sauce arrived. The second night, at a different restaurant, M jumped up when my tomato soup arrived and seated herself at an adjacent table — upwind, I suppose, from the offending odor.

Sweet M's father was deeply annoyed by M's restaurant (mis)behavior. It's easier for me to empathize with her olfactory sensitivities as I have the advantage of having had overpowering morning sickness when I was pregnant with her. That is, I have a relatively recent and visceral memory of how affecting olfactory disgust can be. But for M's father this was becoming a quality of life issue. "We have to be able to eat in a restaurant," he said. "She's got to grow up and learn some manners." And, admittedly, the behavior was awfully annoying.

This got me thinking about some of the times in Sweet M's life that I'd decided that something just ought to be a particular way. There are only a couple of examples of this, as I'm not much for imposing my will in the face of overpowering resistance on M's part. Most of the few times that I've taken such a stand, I've lived to regret it.

Take the case of bedwetting. Sweet M has enuresis, the medical word for bedwetting. Sometime in her kindergarten year — with an eye toward the sleepovers that might be on the horizon in elementary school — I decided that the bedwetting had to come to an end. Her longtime babysitter, a woman who's raised five children and an even larger number of grandchildren, agreed that it was time. M's pediatrician thought it was time as well.

And so we had Sweet M start sleeping without "diapies," as she affectionately called them.

About five nights a week she could get through the night without wetting the bed. But the other two nights the bed was soaked, which interrupted her sleep.

Less important, but not insignificant, was the fact that I was saddled with pounds of extra laundry. If we lived in a suburban house with a washer and dryer, it might not have been so bad. But since laundry for us means schlepping out to the laundromat and paying $2.00 a load for washing and up to $4.00 for the dryer (depending on the drying time), this was a costly and time-consuming undertaking.

Also, because M was still greatly in need of sensory stimulation, we'd let her jump on the bed, which would put small tears in the mattress cover, which would then leak and spoil the mattress. It was a mess, all around. I was spraying the mattress with those odor-killing sprays and schlepping to the laundromat, and basically devoting about 6-10 hours a week to this project of nighttime toilet training.

We persisted on this course for nearly a year. We never scolded her about wetting the bed since we didn't want to make a huge deal out of it, but it was tiresome. She wanted the bed to be dry every bit as much as I did, but we just weren't getting there. Every once in a while we'd go a week without a bedwetting incident, but that was the exception, not the rule.

M's psychiatrist suggested a medication for enuresis, but I didn't want her on an additional medication for something as unimportant as bedwetting.

M herself was patient with our experiment in nighttime toilet training, but one day, after she'd wet the bed four nights in a row, I said, "Oh M, what do you think we should do?"

She paused for a moment, put her finger to her head, and said, "I know. Let's get diapies!"

I mumbled something about let's see if you can get through the night since you're getting to be a big girl, no?

Okay, she'd said, resigning herself.

I became a little obsessed with bedwetting, discussing it with many friends. I learned, to my surprise, that two of the most accomplished women I know — one a professor at a major university, the other a prominent psychologist is the city — both wet their beds until puberty. Sometimes the brain — even the most able of brains — just isn't ready to sleep through the night dry.

Nighttime continence requires both a hormonal function and some kind of bladder control during sleep. Apparently in some children a natural anti-diuretic hormone released at sunset condenses the urine at night, making bladder control easier. In other children, this hormone is absent, making dry nights more challenging, if not impossible. Like so many things, this is not a simple matter of willpower.

About a year ago we changed pediatricians. M's first pediatrician had children herself and moved out of the city (which turned out to be a blessing for all of us.)

When we met with our new pediatrician, I brought up the bedwetting problem and she said that there are things you can do . . . there is an alarm system that wakes them up when the bed gets wet, so it trains them, but it's possible that her brain just isn't developed enough yet to manage nighttime continence. Why don't you just get pull-ups for her?

"I thought we should stay the course, and move forward, not backward."

"Look," M's doctor said, "Think of how much easier your life will be. Eventually she'll be dry through the night."

This was one time that I was completely in tune with medical authority. We got the nighttime diapers. While they're by no means inexpensive, the cost is far less than what I was spending on laundry, not to mention in time. Some countries even have programs to subsidize the cost of diapers for kids with developmental differences. Very civilized. (See Sometimes Holland Feels Like Hell, January 7, 2006 if you live in Canada and need incontinence supplies.) But back to our story in New York City, the capital of rugged individualism and self-mastery . . .

The week after we went back to nighttime diapers, I was at school event and M's teacher came up to me and asked, "What have you been doing with M—she's so happy and relaxed and focused this week?"

"Diapies," I said.

"Diapies?" he asked.

"Yes," I said. "We've gone back to having a nighttime diaper and M seems to be sleeping better now."

"Wow," he said. "Well, it's really working."

Why did we struggle for nearly a year, with M never getting a good night's sleep, and me ever schlepping wet bedding to the laundromat, spraying the mattress with Febreze?

I had gotten it into my head that M ought to be able to keep the bed dry. I'd been dreaming about the sleepovers that the little girl of my fantasies would be having with her little friends. She can't be wearing diapers to a sleepover, I'd think. And the people I trusted — her doctor, her babysitter, her father — all agreed that she ought to be able to do this. But the fact was that she couldn't. She just couldn't.

In one of the self-help books that I've read for my other research there is an expression about the word "should." Readers are encouraged to focus on what they want to do, rather than on what they think they should do. One writer tells his readers to stop "shoulding" all over themselves, referencing the very sorts of toileting and self-control issues that we were struggling with.

In the case of this bedwetting problem our "shoulds" and our "oughts" got in our way of seeing what wasn't working for Sweet M. We weren't struggling because of her autism — or whatever it is that goes on for her — we were suffering from "oughtism": the inflexible belief that something oughta be a particular way, all evidence to the contrary notwithstanding.

I hope we will all be delivered from oughtism. And arrive in a place where there are sweet dreams for all of us.

15 comments:

Anonymous
said...

I wet the bed for a long time myself, and my brothers did get put on medication for it. It was a low-dose antidepressant, from what I recall. That was many, many years ago. None of us has wet the bed in ages.

Depending on the child, diapers are probably better. I didn't need either diapers or medication, but I know that one of my brothers benefitted from the medication in more ways than just the bed-wetting issue.

NoteI am only anonymous because I want to protect my siblings' privacy.

Thanks for this post, MothersVox. Bud's in pull-ups every night, and rare is the morning when he wakes with a dry one. I haven't felt the "should" pressure yet, but I imagine it would only have been a matter of time. Know that Bud (and I) will be resting easier for the forseeable future because you have shared your story.

I think you're right that bed-wetting is more common than many people realize. Both my sister and my son wet the bed until puberty. I tried the pull-ups with my son, but they gave him a rash, so I just bought a sturdy mattress cover that wouldn't rip when he jumped on the bed.

As for being able to eat in a restaurant, that's also a matter of maturity. I remember making a similar scene at an Italian restaurant when I was about nine years old, declaring in a loud voice that spaghetti sprinkled with Parmesan cheese tasted like somebody threw up on the plate.

Needless to say, I didn't get taken to restaurants very often at that age! I was probably about 12 years old before I could sit still and eat restaurant food without complaining. It just takes some kids longer than others, and I agree with you that trying to force M. to learn proper restaurant behavior before she is ready would just be a frustrating experience for everyone involved.

If you have a good reliable babysitter, I'd suggest that you go out to dinner with your husband once or twice a month, so that he won't feel deprived (men really can sulk when they feel like their kids are getting more attention than they are!), and let M. eat her favorite meal at home.

i absolutely love that! getting over oughtism! i'm all for that. i wet the bed for ages and ages. i used to say it happened until just a few years ago but truthfully, i think i was in the early double digits. my body just wouldn't wake up to let me know i had to pee. thanks for sharing this wonderful story.

My NT kid had a horrific time with enuresis. I totally understand the masses of laundry. The diapies weren't an option back then (I don't think they had them).

I figured that if I didn't let him drink anything past like 7 oclock and woke him up at 11:00 pm or so (I had to make myself stay up late to do this) and dragged the poor half asleep kid to the toilet, let him urinate and drug him half asleep back to bed, that he could go through the night dry.

He was something like 11 when he stopped wetting the bed.

Your solution is wonderful. At least one of the medications for bed wetting didn't work at all on my son and it has a tendency to stop working very quickly, anyway, as I understood it.

Good for you and good for Sweet M. Maybe a nose plug thing for the restaurant?

I am so glad that you found something that works for you and Miss M. Bed wetting reminds me a lot of toilet training. Some children just don't fall in the "window of opportunity" that we want them to and that sometimes is a hard pill to swallow. I want so bad for Gabe to be potty trained when his time comes, but I have to give some space to the idea that it may not happen. Miss M will be ready some day. That day will now come with less cost on your emotions, time doing laundry and Deodorizer :o)

They have reinbursement in Michigan for disabled children after 3 years of age (I think) needing diapers. I know someone who gets them. Hope you can get them too.

I get Charlie up at least two times a night to take him to the bathroom (no mean feat, as I have to carry him and he stands up) and his bed is swathed in plastic sheet covers. The whole thing started when he started to take Zoloft----something it relaxing him and abeying his anxiety resulted in him waking up soaked. We've long been displeased with the night-time bathroom business (Charlie does not wake up) and are considering a change of a big decrease in the medication.

Charlie has a kind of hyper-olfactory-need in which he often burrows his nose straight into couches and chairs and blankets and sniffs his food. He doesn't seem to find smells like garlic and tomatoes so offensive but he is a child who favors sushi (raw salmon and all).

Oh MothersVox, thanks for sharing this. I had enurisis until I was around nine, although I never knew that it actually had a label until I read this post. This is not something I share with people, as it was a little traumatic for me...there were no pull-ups when I was Sweet M's age, but if there had been, I think I would have had a lot less anxiety. Oughtism, I looove that! That may be the thing we need to be looking for recovery from!

My 9-1/2 year old son with PDD-NOS has recently stopped wetting the bed at night with the help of the wet-stop bed alarm (you can get it at Amazon, among other places). Our pediatrician recommended it. It took 6 months and was a slow process, but he is almost always dry now. We made sure he didn't feel pressured about it, and got his 'buy-in' about using it...he actually thought it was pretty cool.

My 6 y/o daughter has PDD-NOS (diagnosis in progress still) and she wears GoodNites every night. She has had very few dry mornings, so we just never took her out of pullups at night...they just got bigger as she did.

Her mattress is also in a zippered vinyl cover to keep it dry, same with her pillows (mostly due to nighttime nosebleeds). The diaper is just part of her bedtime routine, with her pj's.

Don't feel bad about it. It's one of the things we can't control. The more blogs I read, the more "normal" it sounds for kids with autism.

My son had a difficult time with potty training but at 5 years old, he also had up to 4 bowel movements per day and it was too much for me to deal with so I tried a routine I read in a book about potty training. What I had to do was to drill him on what to do when he felt the sensation of having to go and to go through the motions of what to do next and so on.

It went like this...when you feel like you need to make a bm you run to the bathroom. then you take off your pants, then you pull down your underpants, then you sit on the toilet then you push out the BM. Then you get the tissue and you wipe, then you get down and pull up your pants then you wash your hands then you get a treat. I did this 4 times a day until he got it (it took 4 months) but it was worth it. No mater how many times he did not do it right I rewarded and praised him for trying and making small progress and it worked. I made it as fun and as matter-of-fact as I could and I praised and encouraged him so he was willing to keep trying.

It taught me and him, how to break down each task into managable peices for him and to help him recognize his own progress and to praise himself no matter how long it took.

I am happy to say my son is now a successful adult who has gone to college, learned how to drive safely, works at a great job that really suits him and he is still learning how to deal with life and progressing, one step at a time.

It can be done...we just need to be kind to ourselves and free ourselves to do things at the right pace and in the right way for the individuals involved.

A psychologist who is very experienced with autism and Asperger's observed Sweet M at her school last week, then called me to report on ...

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